Preparedness for the future in patients with relapsed or refractory hematopoietic malignancies in the treatment process: a qualitative study

Introduction

The purpose of this study is to clarify how patients with relapsed or refractory (R/R) hematological malignancies prepare for the future and set treatment goals. Understanding this awareness will contribute to forming treatment plans based on individual values through dialogue with patients, and will ultimately serve as the basis for the practice of advance care planning (ACP).

Hematopoietic malignancies are diseases for which intensive chemotherapy is usually initiated immediately after diagnosis, and multidrug therapy is the standard of care (1,2). Most patients with R/R hematopoietic malignancies require more intensive chemotherapy, including hematopoietic stem cell (HSC) transplantation and chimeric antigen receptor T-cell therapy, which carries the risk of serious adverse events and death (3). Patients with R/R HSCs usually continue to be treated with chemotherapy until the end of life (EOL) in the hope of potential cure and of prolonging life with aggressive treatment and relieving physical pain by decreasing leukemia cells (4). The symptom burden experienced by patients is comparable to or exceeds the physical and psychosocial burden experienced by patients with metastatic solid tumors (3-5), and the course of the disease is characterized by its unpredictability (6).

Understanding the prognosis of patients with R/R hematopoietic malignancies is an important factor in providing care consistent with their values and preferences (7,8). However, these patients may not always fully understand the severity of their disease or the likelihood of cure (9), and those who overestimate survival are more likely to prefer intensive care (10).

Because of the unpredictable nature of the symptoms experienced by patients with hematological tumors and their treatment course (11), it is difficult to fully understand the severity of the disease and the difficulty of achieving a cure (10), and various issues have arisen, including the implementation of chemotherapy within 30 days of death, the high rate of ICU utilization, and the short survival time in hospices (12). In Japan, the concept of ACP has been incorporated into Education for Implementing End-of-Life Discussion (E-FIELD), a decision-support education program developed by the Japanese Ministry of Health, Labour and Welfare based on the Guidelines for the Decision-Making Process for Health and Care in the Final Phase of Life (13). ACP is considered to be a type of decision-making support that includes the final stages of life, and it is necessary for patients to prepare for the future by thinking about their current health condition, future life, and the medical care and treatment they would like to receive going forward (13). According to Weeks et al., discussions aimed at helping patients gain a more realistic understanding of their condition are desirable but may not always take place (14). Other studies have compared the attitudes and sentiments of solid tumor and hematologic oncologists toward EOL care and found that hematologic oncologists were more resistant to discussing death and EOL care and that “resistance to giving up on the patient”, “a sense of failure in treatment”, and “taking away the patient’s hope” on the part of the medical providers were contributing factors (15,16). The most frequently reported barrier to quality EOL care was “unrealistic patient expectations” (4), but it was suggested that factors preventing patients from understanding their prognosis included their desire for continued treatment in the hope of achieving remission or cure (17) and healthcare professionals’ attitudes toward EOL matters. These factors may be unique to patients with hematopoietic malignancies.

Patients with R/R hematological malignancies have different motivations for continuing treatment, and their hopes and goals for treatment also differ from patient to patient. Patients with R/R hematological malignancies often face unique challenges, such as limited treatment options and the inability to maintain performance status (PS), cognitive function, and quality of life (QOL) without aggressive treatment (18,19), resulting in a limited prognosis. Therefore, it is very important to understand each patient’s motivation for treatment and to confirm their wishes and values through dialogue at the stage of relapse and refractory treatment, in order to create a treatment plan that is in line with the patient’s individual goals. We believe that this understanding will form the basis for supporting EOL decision-making based on individual values for patients with R/R hematological malignancies, who have previously placed importance on aggressive treatment.

Based on the ACP definition in E-FIELD (13), the operational definition of preparedness for the future includes the way in which R/R hematologic malignancy patients think about their future while receiving treatment, the way they are preparing for it, and the way they are thinking about their treatment plan and goals. We present this article in accordance with the COREQ reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-24-124/rc) (20).

Methods

Study design

This qualitative study followed an inductive approach (21). One-on-one semi-structured interviews were conducted in Japanese, and the collected data were analyzed to obtain categorical insights. The study aimed to recruit 20 participants or to reach data saturation (i.e., no new categories would emerge). While recognizing that there is always new information, new information collected from further interviews will determine when data saturation is reached (22).

Appropriate communication strategies for participants

The participants were given a written explanation of the study. The reason for conducting the study was explained by noting the importance of healthcare professionals understanding the values and outlook on life of patients during the course of treatment, along with the significance of ACP as a means for patients to think about and discuss their future medical care and treatment. The researcher explained that she was conducting this research as part of her academic research. Participants were asked verbally and in writing whether they were interested in participating in the study, and written informed consent was obtained. Because the interviewees were patients with R/R cancer undergoing treatment, and considering the seriousness of the topic, all participants were provided information about psychological support services.

The interview guide was developed with reference to E-FIELD (13) and focused on two main areas (see Table S1). First, we explored the patient’s thoughts about the current treatment process for hematopoietic malignancies, and then we explored their thoughts about their future life. The interview guide was pilot-tested among the study team in discussion with the principal investigator, a hematologist-oncologist, and a clinical nurse. The interview guide was refined through repeated interviews with the participants, and the content and flow of the questions were improved. This process led to the formulation of effective questions that would provide deeper insights. This structure was intended to provide insights into the thoughts and values of patients as they continue with their treatment.

Setting/sampling

Participants were recruited from university hospitals in Tokushima Prefecture, Japan, and patients meeting the eligibility criteria (Table 1) were deliberately recruited by the attending physicians or hematologists. In this study, patients who satisfied the inclusion criteria shown in Table 1 were identified by the hematology department doctors from among all patients who were hospitalized for treatment purposes during the period from December 2022 to August 2023. Prior to the study, the participants did not have a relationship with the researchers. The lead researcher (K.A.) approached potential participants in person and explained the study to the identified patients. Only those who agreed to participate and provided consent were included as participants. The lead researcher (K.A.) was the only person who approached the patients directly in this study.

Data collection

Before conducting the interviews, consent was obtained from the participants for the researcher to obtain sociodemographic and medical information from their electronic health records, including age, sex, family background, diagnosis, treatment, and physical condition. From November 2022 to August 2023, semi-structured interviews lasting 40 to 60 min were conducted by a female author (K.A.), a registered nurse with a Master of Science in Nursing trained in palliative care and 14 years of interview experience. Interviews were conducted in a private room in hospital wards to protect the patient’s privacy and a distance of at least 1 m was maintained between the researcher and the patient to prevent the spread of COVID-19. During the interview, participants were encouraged to freely express their thoughts if they wished to discuss any matter further. Two interviews were conducted with all participants, and a preliminary analysis of the content was performed based on the verbatim record of the first interview. At the second interview, the participants were shown the transcripts and preliminary analysis results to check for any misunderstandings.

All interviews were recorded with a voice recorder (AutoMemo^®; Sourcenext Corp., Tokyo, Japan) with the patient’s permission and later transcribed verbatim. The interviewer (K.A.) then checked the transcript.

Data analysis

Krippendorff’s (23) qualitative content analysis method was used to analyze the data. Data management was done using Excel. The verbatim transcripts of the interviews were repeatedly read, and—based on the verbatim transcript of the interview—the lead researcher (K.A.) divided the content of the statements into “meaningful units” and created codes, using concise expressions. These codes consisted of meaningful units of 1–3 words extracted from the patient’s statements, and expressed specific statements, actions, emotions, and so on.

Next, similar codes were grouped together and those that were related were summarized into subcategories, which consisted of multiple codes and expressed more comprehensive meanings. Furthermore, these subcategories were integrated based on content to form categories, so that the essential themes of the patients’ preparations for the future would emerge. For example, statements such as “I feel the limits of the treatment I can do because my body and blood cells are not recovering, even though I want to proceed with treatment” and “He is increasingly dependent on anticancer drugs and blood transfusions, and is concerned about whether he can continue treatment” were extracted as codes and then grouped together with other similar codes into a subcategory such as “I am aware that I am at the limit of treatment in a situation where I am not recovering as well as I had been”. Finally, two of the researchers (K.A., Y.I.) collected and compared all the subcategories obtained in the individual analysis, grouped those with similar semantic content, expressed their essential meaning as necessary for the future preparedness of patients, and created categories. Finally, two of the researchers (H.M. and S.N.) assessed the consistency of the categories and two other researchers (K.A. and Y.I.) reviewed the records to ascertain the thoughts of patients about their preparedness for the future and interviewed them until saturation was reached.

Statistical analysis

This study employed a qualitative research design; therefore, statistical analysis was not performed. The primary aim of this study was to explore the thoughts, values, and attitudes of patients with relapsed/refractory hematologic malignancies during the treatment process. Due to the nature of the study, which focused on obtaining in-depth insights through semi-structured interviews, statistical methods were not applicable.

Additionally, no statistical analysis was performed for the sociodemographic or medical background of the participants, nor for the results, as the study aimed to understand individual perspectives rather than generate generalizable quantitative data.

Ethics approval

This study was approved by the Ethics Review Committee for Life Science and Medical Research at the Tokushima University Hospital (No. 4244-1). The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013) (24).

Results

Of the 18 eligible patients who were invited to participate, 2 declined to participate due to illness and 16 agreed to participate. The median age of the participating patients was 73 (range, 22–87) years, with 11 men (Table 2). Of the 16 patients, most had received multiple treatments within 3 years of diagnosis and were showing signs of relapse or refractoriness. Furthermore, all but 1 of the 16 patients had a caregiver.

The analysis identified four core categories reflecting the patients’ perceptions of preparedness for the future while undergoing treatment for R/R hematopoietic malignancies.

The core categories are as follows:

• I want to live through the treatment until the end of my life because I know recovery is difficult.
• My current treatment depends on how much my body can endure.
• I want to keep trying, but I am at the limit of what I can do now.
• I want to continue even if the treatment is limited because I think it will help someone else.

The 40 codes were first grouped into 13 subcategories and then grouped into four categories based on the similarity of semantic content (Table 3).

I want to live through the treatment until the end of my life because I know recovery is difficult

This category comprised four subcategories. The patients wanted to be treated so that they would have no regrets about their life because they thought their final days were near, and they wanted to make their own decisions about their treatment until the very end of their life. One patient wished to “continue to live with cancer through the treatment while continuing to receive anticancer drugs,” saying that “I don’t want to waste the additional time I have gained from the treatment.”

This category indicated a future mindset for patients with R/R hematopoietic malignancies to live the additional life they had gained through continued treatment to the end, not with the expectation of cure, but to make the most of the limited time they have left so they will not have any regrets.

“If you don’t do the treatment, isn’t that where you are giving up? If you don’t do treatment, then you just die a slow death. But if there is a way, I would like to try it. If I do something, I might win. But if I don’t step up to the plate, there will be no strikeout or homerun. If you have a chance, you might as well stand up. You might die when the time comes, or you might survive with a good performance. I’ve tried my best to be satisfied with the process.” (50s, male, lymphoma).

My current treatment depends on how much my body can endure

This category comprised two subcategories, reflecting patients’ sentiments of determination despite physical limitations and their commitment to managing their lives to support treatment efforts. Patients expressed feelings such as “My body is not able to keep up but I don’t want to lose to the repeated treatment” and “I will spare no effort to adjust my life because making the treatment work depends on my body,” reflecting their perseverance in self-management.

Patients in this category emphasized the significance of their physical condition in determining their survival prospects. They exhibited a sense of preparedness for the future, understanding the pain and severity of their treatment and recognizing their resistance after undergoing treatment for an extended period.

“This treatment is different from having surgery and getting stitched back up with other cancers. So it is up to the doctors and my body to decide how far I can go. One of the questions is how long I can keep up my strength. At first, I felt lonely in the clean room environment. But I tried to create a rhythm. I thought about what I needed to do. When the physical therapist didn’t come, I would do my rehabilitation in the mornings and afternoons.” (80s, male, leukemia).

“To be honest, it’s hard for the doctors and myself to know which medicine will work, so we are grasping for straws. It’s mentally tough when it doesn’t work. We don’t know until we do the bone marrow test. The tests are painful. But I do my best and do what I can. It’s not so much a possibility as a sense of hope. I think it’s more of a mentality, a spirit of not giving up because I feel like I’m going to give up. With leukemia, I often have to fight the disease alone. I have been through a lot of pain, and I am still going through it. I don’t want it to be in vain. It’s almost like a will. I can anticipate it to a certain extent because I have experienced it three or four times. I am used to that. I shouldn’t get used to it.” (20s, male, leukemia).

I want to keep trying, but I am at the limit of what I can do now

This category comprised four subcategories. The patients were “aware that they are at the limit of treatment in a situation where they are not recovering as well as they had been,” and felt that “death, which they cannot escape, is finally drawing near.”

“Despite knowing that there are limits, they wanted to find a ray of light in treatment” and wanted to think about “turning their remaining lives around because death is inevitable even if they receive treatment.”

Despite their determination to persevere, the patients faced a reality where their bodies could no longer withstand the destructive effects of the cancer, including diminished blood cell counts, and recognized that their efforts alone were insufficient to overcome the situation. This realization signaled a shift in their mindset, acknowledging the impending inevitability of death.

“I had undergone about three rounds of anti-cancer drug treatment for a considerable time, and my white and red blood cell counts had never been as low as they are now. I began to entertain the possibility that I might not be eligible for further anti-cancer drug treatment, leading me to contemplate the end of my life seriously. Repeated anti-cancer drug treatment would inevitably cause harm, including damage to healthy cells. So, I sensed that it might be time to face this reality, particularly given the slow recovery of my blood cells. I started to believe that anti-cancer drugs might no longer be a viable option. When the doctor conveyed this possibility to me, I initially found it hard to believe. However, my current circumstances seem to have provided me with a sense of certainty.” (70s, female, myeloma).

Overall, the patients in this category grappled with the dual realization of treatment limitations and the approaching end of their lives, highlighting the complexities of navigating the emotional and psychological aspects of living with R/R hematopoietic malignancies.

I want to continue even if the treatment is limited because I think it will help someone else

This category comprised three subcategories: “I do not want to disappoint those around me who care more about living than I do, even at the limits of treatment”, “I want to use the additional time I’ve gained from the treatment to the best of my ability for my family,” and “I want my treatment experience to contribute to the advancement of medicine.”

The patients expressed their future intention to continue to pursue treatment not for themselves but to share the experiences gained through treatment with the people they care about as well as to contribute to the future of medicine.

“I don’t see a future anymore. One of the objectives of this treatment is to return home alive. We aim to provide the family with ample time to prepare themselves and come to terms with the situation. Above all, it’s crucial to ensure that those left behind understand the kind of life they’ll be leading.” (50s, male, leukemia).

“I was asked whether I wanted to be treated with Polivy or rituximab when I was treated with anticancer drugs. I chose the newly available treatment. Whether it is a success or a failure, it is useful in the sense that it increases the number of cases. It would be strange to call it a contribution, but I thought it would be better to be useful in one way or another. There are medical staff members who are taking care of me now, but beyond them, there are medical students and people who are about to be diagnosed with diseases, although they cannot see it. Then I can be of use, even if only a little. This alone is the meaning of life.” (70s, male, lymphoma).

Discussion

Key findings

This study is the first to reveal the thoughts of patients with R/R hematopoietic malignancies regarding their medical care and treatment and their future life, from the perspective of their health status. Patients underwent a high number of treatment regimens within a relatively short time after diagnosis, underscoring the refractory nature of their condition. This rapid treatment cycle, characteristic of hematologic malignancies, reflects the aggressive progression and resistance often observed. The results of this study may indicate a tendency specific to Japanese patients with R/R hematological malignancies; however, it is a relatively small sample of 16 people, most of whom were over the age of 65 years, and because previous research (25) has shown racial and ethnic differences in ACP, caution is warranted when applying it directly to other cultures and races.

Patients diagnosed with R/R hematopoietic malignancies are typically informed that although they cannot be cured, they can be treated (11). For these patients, not receiving aggressive treatment implies that their life may end within a few weeks (26,27), presenting them with the stark choice of “treat or die”, necessitating consideration of treatment intensity and associated risks (28). This understanding underscores the necessity of aggressive treatment to save their lives.

In contrast to patients with solid tumors who anticipate their mortality and discontinue active treatment as their QOL declines (10), patients with hematological malignancies are close to death, so they rarely choose to discontinue active treatment, and a lack of awareness regarding the prognosis of patients with hematological malignancies has been pointed out (29,30). This lack of awareness is considered to be one of the challenges in ACP and EOL care for patients with hematological malignancies, and support for how to balance treatment and life is particularly important. Research (31,32) has indicated that patients with R/R hematopoietic malignancies can achieve their life goals while benefiting from aggressive treatment. The findings of the present study suggest that for these patients, the primary objective of treatment is not merely eradicating tumor cells but also involves preparing for continued treatment in the future while focusing on how to integrate the treatment into their lives, as they come to grips with the challenging nature of their condition and the limited likelihood of a cure.

The participants in this study expressed their thoughts about the difficulty of continuing treatment through the physical symptoms and discomfort they experience. Aging and repeated treatment increase treatment toxicity, leading to decreased remission rates, increased relapse rates, and ultimately decreased survival (33). Therefore, patients with R/R hematopoietic malignancies must devote substantial efforts to maintain their physical function in order to tolerate treatment toxicity and continue aggressive therapy (34). The patients also demonstrated that their ability to sustain active treatment depends on their body’s ability to tolerate the duration of treatment. This was evident in their willingness to tolerate a variety of painful tests and uncomfortable symptoms, to self-manage changes in laboratory values, and to contribute to the adjustment of treatment. The patients were aware that their bodies were the determining factor in their survival and that successful treatment would be difficult without maintaining a body that could withstand the struggle against aggressive treatment. To this end, they showed how important it was to harmonize their bodily functions with the treatment.

Patients with hematological malignancies experience changes in symptoms according to their treatment schedule (35). Although they may feel the burden of symptoms due to the treatment, they are likely to perceive the effects of treatment through the recovery of their physical functions as their blood cell counts improve as well as through the results of blood tests.

For patients with R/R hematopoietic malignancies, the failure of hematopoietic function to recover according to the conventional treatment schedule and the addition of symptoms to the daily activities they had previously been able to perform were factors that made them feel the limitations of their treatment. This is similar to a study of patients with refractory hematopoietic malignancies who were thought to have a life expectancy of 1 year or less, which found that blood test results were the most important factor in determining the length of time a patient faced death, as the results indicated whether the patient could continue to receive treatment (14).

Patients with hematological malignancies, especially those with R/R disease, experience treatment-related toxicities that affect their physical and cognitive functioning (36). As a result of these experiences, they are likely to contemplate whether their bodies can withstand and overcome repeated treatment schedules. During this process, they may come to recognize their physical and mental limits as well as the inevitability of death. Previous research suggests that as treatment options run out, suffering increases, and uncertainty creates hope, acting as a buffer against the certainty of impending death (37). This uncertainty plays an important role in blood cancers, which are incurable. The participants in this study also considered the difficulty of continuing treatment based on the physical symptoms and discomfort they experienced, exhibiting a future mindfulness of the balance between life and death at all times.

Patients with R/R hematopoietic malignancies may have had their identities severely shaken from the time of diagnosis (38,39), including role changes within the family, forced leaves of absence or retirement due to immunodeficiency or late effects, and an inability to fulfill social roles (40). This is true not only for the patients but also for their families, who are forced to make lifestyle changes to facilitate continued treatment (11). Also, in some cases, such as allogeneic HSC transplantation, family members are part of the treatment, suggesting that patients with R/R hematopoietic malignancies will consider the meaning and purpose of the treatment, not only for themselves but also in light of their surroundings. It has been reported that patients with R/R hematopoietic malignancies voluntarily curtail social interactions, including limiting communication with friends, because of repeated and prolonged hospitalizations, frequent outpatient visits, and the threat of infection risk and poor prognosis caused by a weakened immune system (41). For patients, family members who have shared their suffering and encouraged and supported them through difficult times are considered to be the best supporters. Therefore, it can be inferred that patients feel frustrated when they are unable to fulfill their family’s wish for them to live and that continuing treatment to the very end would help them avoid regrets from their family members who had been there with them throughout the whole ordeal. Many of the participants in this study talked about their desire to reduce the burden on their families by making living arrangements for their final days while their body is still able to continue treatment. This is also because the psychological circumstances of these patients and their families have been described as interdependent (42), suggesting that the patients themselves are aware of the remaining time in their lives and try to prepare for their final days with consideration for their families who have fought alongside them. For patients who feel that they have been kept alive by others, benefiting from the faceless goodwill of bone marrow transplantation and multiple transfusion therapies, the treatment they are receiving now, even in a treatment-resistant state, can provide research data for medical advancements that will benefit others after their lives are over. Patients with R/R hematopoietic malignancies have the mindset to continue facing their treatment in hopes of contributing to society.

Clinical implications

Nurses working in hematology wards also recognize that they share a lot of time with patients and that it is an important responsibility of nurses to be able to represent their patients’ needs and concerns (43), and they want to help patients live as good a life as possible within the trajectory of palliative care (44). However, busy hematology wards are more concerned with active treatment, including chemotherapy and symptom management, and thus there are fewer opportunities to discuss EOL care (45). Therefore, many of these nurse experience distress in caring for patients with hematopoietic malignancies, who often die during active treatment (46). This may follow from the reported difficulties of ACP providers with patients with hematopoietic malignancies, who report that they are reluctant to discuss topics related to death (47).

The idea that patients with R/R hematopoietic malignancies are aware of the difficulty of continuing treatment based on the physical symptoms and discomfort they feel, as revealed in this study, can be considered as an opportunity to discuss medical care and care for living their lives to the end, including EOL care, as a turning point in treatment. Accordingly, we believe that by thinking together about the purpose of the patient’s treatment and how to make the most of the life gained through treatment, the skepticism that nurses may have can be alleviated and the patient’s sense of values can be maximized.

Limitations

Limitations of this study include the fact that it was conducted at a single institution, focused on hematopoietic malignancies as a whole rather than specific diseases, and the general health of the patients was relatively stable immediately before discharge. In this study, we did not collect information on the participants’ religious beliefs. It has been reported that having religious beliefs can affect ACP (48), and thus the results of the present study should be interpreted with caution in terms of how they might apply to patients with hematological malignancies from specific religious backgrounds. In future studies, a more detailed classification of the patients’ diseases, such as leukemia or lymphoma, would provide more disease-specific insights into the future disposition of patients with R/R hematopoietic malignancies. In addition, we believe that the outpatient setting will allow us to capture different aspects of the treatment process and collect valuable data to understand how patients with R/R hematopoietic malignancies change their disposition over time and from a longer-term perspective.

Conclusions

Patients with hematopoietic malignancies who are undergoing treatment may be motivated by a variety of different factors to continue with treatment. Discussing patients’ goals and wishes with respect to treatment is critically important to ensure that such treatment is aligned their preferences. The findings of this study provide insights into patients’ intentions and awareness regarding future treatment, thereby supporting the development of treatment plans grounded in each patient’s values through ongoing dialogue. Future challenges include a need to further understand patients’ goals by tracking shifts in their awareness and evolving hopes across different stages of treatment. Additionally, it is essential to explore how these insights can aid in the coordination and alignment of care plans for EOL decision-making support for patients with R/R hematologic malignancies.

Acknowledgments

Prior presentation: part of the contents of this paper was presented at the 61^st Annual Meeting of the Japanese Association for Cancer Therapy.

Funding: This work was supported by an SGH Foundation 4th SGH Cancer Nursing Research Grant (FY2022).

Footnote

Reporting Checklist: The authors have completed the COREQ reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-24-124/rc

Data Sharing Statement: Available at https://apm.amegroups.com/article/view/10.21037/apm-24-124/dss

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-24-124/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-24-124/coif). All authors report this work was supported by an SGH Foundation 4^th (FY2022) SGH Cancer Nursing Research Grant. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013). This study was approved by the Ethics Review Committee for Life Science and Medical Research at the Tokushima University Hospital (No. 4244-1) and informed consent was obtained from all individual participants.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

References

1. Japanese Society of Hematology. Practical Guidelines for Hematological Malignancies 2018 revised edition. 2018 [cited May 29, 2022]. Available online: http://www.jshem.or.jp/gui-hemali/table.html
2. Bryant AL, Deal AM, Battaglini CL, et al. The Effects of Exercise on Patient-Reported Outcomes and Performance-Based Physical Function in Adults With Acute Leukemia Undergoing Induction Therapy: Exercise and Quality of Life in Acute Leukemia (EQUAL). Integr Cancer Ther 2018;17:263-70. [Crossref] [PubMed]
3. El-Jawahri A, Nelson AM, Gray TF, et al. Palliative and End-of-Life Care for Patients With Hematologic Malignancies. J Clin Oncol 2020;38:944-53. [Crossref] [PubMed]
4. El-Jawahri A, Li S, Antin JH, et al. Improved Treatment-Related Mortality and Overall Survival of Patients with Grade IV Acute GVHD in the Modern Years. Biol Blood Marrow Transplant 2016;22:910-8. [Crossref] [PubMed]
5. Tanzi S, Luminari S, Cavuto S, et al. Early palliative care versus standard care in haematologic cancer patients at their last active treatment: study protocol of a feasibility trial. BMC Palliat Care 2020;19:53. [Crossref] [PubMed]
6. Epstein AS, Goldberg GR, Meier DE. Palliative care and hematologic oncology: the promise of collaboration. Blood Rev 2012;26:233-9. [Crossref] [PubMed]
7. Hui D, Didwaniya N, Vidal M, et al. Quality of end-of-life care in patients with hematologic malignancies: a retrospective cohort study. Cancer 2014;120:1572-8. [Crossref] [PubMed]
8. Gray TF, Temel JS, El-Jawahri A. Illness and prognostic understanding in patients with hematologic malignancies. Blood Rev 2021;45:100692. [Crossref] [PubMed]
9. Mack JW, Weeks JC, Wright AA, et al. End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol 2010;28:1203-8. [Crossref] [PubMed]
10. Sekeres MA, Stone RM, Zahrieh D, et al. Decision-making and quality of life in older adults with acute myeloid leukemia or advanced myelodysplastic syndrome. Leukemia 2004;18:809-16. [Crossref] [PubMed]
11. McCaughan D, Roman E, Smith AG, et al. Haematology nurses' perspectives of their patients' places of care and death: A UK qualitative interview study. Eur J Oncol Nurs 2019;39:70-80. [Crossref] [PubMed]
12. Lowe JR, Yu Y, Wolf S, et al. A Cohort Study of Patient-Reported Outcomes and Healthcare Utilization in Acute Myeloid Leukemia Patients Receiving Active Cancer Therapy in the Last Six Months of Life. J Palliat Med 2018;21:592-7. [Crossref] [PubMed]
13. Ministry of Health, Labour and Welfare. Report on the state of dissemination and awareness of medical treatment and care in the last stage of life. 2018 [cited October 11, 2022]. Available online: https://www.pref.miyagi.jp/documents/8845/767923.pdf
14. Weeks JC, Cook EF, O'Day SJ, et al. Relationship between cancer patients' predictions of prognosis and their treatment preferences. JAMA 1998;279:1709-14. [Crossref] [PubMed]
15. Habib AR, Cronin AM, Earle CC, et al. How Do Blood Cancer Doctors Discuss Prognosis? Findings from a National Survey of Hematologic Oncologists. J Palliat Med 2019;22:677-84. [Crossref] [PubMed]
16. Hui D, Bansal S, Park M, et al. Differences in attitudes and beliefs toward end-of-life care between hematologic and solid tumor oncology specialists. Ann Oncol 2015;26:1440-6. [Crossref] [PubMed]
17. LeBlanc TW, El-Jawahri A. When and why should patients with hematologic malignancies see a palliative care specialist? Hematology Am Soc Hematol Educ Program 2015;2015:471-8. [Crossref] [PubMed]
18. Alnaeem MM, Shehadeh A, Nashwan AJ. The experience of patients with hematological malignancy in their terminal stage: a phenomenological study from Jordan's perspective. BMC Palliat Care 2024;23:36. [Crossref] [PubMed]
19. El-Jawahri A, Webb JA, Breffni H, et al. Integrating Palliative Care and Hematologic Malignancies: Bridging the Gaps for Our Patients and Their Caregivers. Am Soc Clin Oncol Educ Book 2024;44:e432196. [Crossref] [PubMed]
20. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007;19:349-57. [Crossref] [PubMed]
21. Cresswell JW, Poth CN. Qualitative Inquiry and Research Design: Choosing Among Five Approaches. Thousand Oaks (CA): Sage Publications, 2016.
22. Fusch PI, Ness LR. Are we there yet? Data saturation in qualitative research. Qual Rep 2015;20:1408-16. [Crossref]
23. Krippendorff K. Content Analysis: An Introduction to Its Methodology. Thousand Oaks (CA): Sage Publications, 2018.
24. World Medical Association. World Medical Association Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. 2013 [cited November 22, 2024]. Available online: https://www.wma.net/wp-content/uploads/2016/11/DoH-Oct2013-JAMA.pdf
25. Lenko R, Voepel-Lewis T, Robinson-Lane SG, et al. Racial and Ethnic Differences in Informal and Formal Advance Care Planning Among U.S. Older Adults. J Aging Health 2022;34:1281-90. [Crossref] [PubMed]
26. Snowden JA, O'Connell S, Hawkins J, et al. Haematological cancers: improving outcomes. A summary of updated NICE service guidance in relation to Specialist Integrated Haematological Malignancy Diagnostic Services (SIHMDS). J Clin Pathol 2017;70:461-8. [Crossref] [PubMed]
27. Andrykowski MA, Bishop MM, Hahn EA, et al. Long-term health-related quality of life, growth, and spiritual well-being after hematopoietic stem-cell transplantation. J Clin Oncol 2005;23:599-608. [Crossref] [PubMed]
28. LeBlanc TW, Fish LJ, Bloom CT, et al. Patient experiences of acute myeloid leukemia: A qualitative study about diagnosis, illness understanding, and treatment decision-making. Psychooncology 2017;26:2063-8. [Crossref] [PubMed]
29. Crawford R, Sully K, Conroy R, et al. Patient-Centered Insights on Treatment Decision Making and Living with Acute Myeloid Leukemia and Other Hematologic Cancers. Patient 2020;13:83-102. [Crossref] [PubMed]
30. Shimer S, Allen OS, Yang C, et al. Prognostic Understanding, Goals of Care, and Quality of Life in Hospitalized Patients with Leukemia or Multiple Myeloma. J Palliat Med 2024;27:879-87. [Crossref] [PubMed]
31. Graffigna G, Cecchini I, Breccia M, et al. Recovering from chronic myeloid leukemia: the patients' perspective seen through the lens of narrative medicine. Qual Life Res 2017;26:2739-54. [Crossref] [PubMed]
32. Walker AR. How to approach shared decision making when determining consolidation, maintenance therapy, and transplantation in acute myeloid leukemia. Hematology Am Soc Hematol Educ Program 2020;2020:51-6. [Crossref] [PubMed]
33. Fournier B, Nicolas-Virelizier E, Russo C, et al. Individualised physical activity programme in patients over 65 years with haematological malignancies (OCAPI): protocol for a single-arm feasibility trial. BMJ Open 2021;11:e046409. [Crossref] [PubMed]
34. Gökbuget N, Stanze D, Beck J, et al. Outcome of relapsed adult lymphoblastic leukemia depends on response to salvage chemotherapy, prognostic factors, and performance of stem cell transplantation. Blood 2012;120:2032-41. [Crossref] [PubMed]
35. Shaulov A, Rodin G, Popovic G, et al. Pain in patients with newly diagnosed or relapsed acute leukemia. Support Care Cancer 2019;27:2789-97. [Crossref] [PubMed]
36. Neuendorff NR, Khan A, Ullrich F, et al. Cellular therapies in older adults with hematological malignancies: A case-based, state-of-the-art review. J Geriatr Oncol 2024;15:101734. [Crossref] [PubMed]
37. Campbell K, Harris F, Stoddart K. The Hematology Cancer Patient Experience of "Facing Death" in the Last Year of Life: A Constructivist Grounded Theory Study. Cancer Nurs 2024;47:132-40. [Crossref] [PubMed]
38. Janicsák H, Ungvari GS, Gazdag G. Psychosocial aspects of hematopoietic stem cell transplantation. World J Transplant 2021;11:263-76. [Crossref] [PubMed]
39. Kurosawa S, Yamaguchi T, Mori A, et al. Resignation and return to work in patients receiving allogeneic hematopoietic cell transplantation close up. J Cancer Surviv 2022;16:1004-15. [Crossref] [PubMed]
40. Stephens JML, Thorne S. When Cancer Is the Self: An Interpretive Description of the Experience of Identity by Hematology Cancer Patients. Cancer Nurs 2022;45:E504-13. [Crossref] [PubMed]
41. Deckert AL, Gheihman G, Nissim R, et al. The importance of meaningful activity in people living with acute myeloid leukemia. Leuk Res 2018;67:86-91. [Crossref] [PubMed]
42. Sannes TS, Ranby KW, Yusufov M, et al. More often than not, we're in sync: patient and caregiver well-being over time in stem cell transplantation. Health Qual Life Outcomes 2022;20:6. [Crossref] [PubMed]
43. McPherson S, Mitchell AK, Sletten I, et al. Haematological nurses' experiences about palliative care trajectories of patients with life-threatening haematological malignancies: A qualitative study. Nurs Open 2023;10:3094-103. [Crossref] [PubMed]
44. Österlind J, Henoch I. The 6S-model for person-centred palliative care: A theoretical framework. Nurs Philos 2021;22:e12334. [Crossref] [PubMed]
45. Langbecker D, Ekberg S, Yates P, et al. What are the barriers of quality survivorship care for haematology cancer patients? Qualitative insights from cancer nurses. J Cancer Surviv 2016;10:122-30. [Crossref] [PubMed]
46. Dowling M, Fahy P, Houghton C, et al. A qualitative evidence synthesis of healthcare professionals' experiences and views of palliative care for patients with a haematological malignancy. Eur J Cancer Care (Engl) 2020;29: [Crossref] [PubMed]
47. Shaulov A, Aviv A, Alcalde J, et al. Early integration of palliative care for patients with haematological malignancies. Br J Haematol 2022;199:14-30. [Crossref] [PubMed]
48. Heintz HL, Paik JM, Baird L, et al. What matters most to older adults: Racial and ethnic considerations in values for current healthcare planning. J Am Geriatr Soc 2023;71:3254-66. [Crossref] [PubMed]